We've also come to terms with the simple facts that not everyone we shared our NICU experience with had the same wonderful outcome and that premature births are going to continue to impact people as long as there are births of any sort. I get an uneasy feeling knowing that as I write this, someone else is being forced into that same situation we faced a year ago and that there have been no substantial changes made in the past year to accommodate the financial or emotional toll that two to three months spent in a children's hospital takes on a family.I put one foot firmly on my soap box a few months ago to bring up the topic of health care and how it directly relates to care in premature babies, with the main point being that the family leave system isn't geared for these types of situations. My wife's maternity leave ended weeks before my son would be able to come home and there was fancy HR footwork and an understanding boss to pull us out of that mess, but some people aren't as lucky to be in a position like that.
I've learned from experience that some people emerge from their time in the NICU with a stronger belief that the system is fine as it is, because they were able to use their allocated leave and health insurance without a hitch, but I just can't get behind that. I am thankful that we were OK financially (due in large part to the hours my wife had to spend on the phone to sort all of that out), but I also know that as a community, we can do better. I honestly feel it's a disservice to the families that come up behind us to leave everything the way it is, sigh deeply and think, "Well, I'm glad we got through that."
Looking back a year later, we've had a better outcome than we could have hoped for on the day our son arrived. My wife and I have held together better than I had hoped as well and developmentally, our son continues to hit his milestones and run ahead of schedule on a few things. When we switched pediatricians, his full history wasn't on the charts and his doctors had no idea that he was born three months prematurely. These are minor and major blessings and we try our best to recognize that, without dwelling too much on what could have been.
In the interest of giving back in ways other than monetarily (which is important as well - The Ronald McDonald House, March of Dimes and others provide irreplaceable and incredibly vital services to families and patients) I want to share a few things I've learned in the past year. Hopefully this will somehow help someone who is in the same situation we were in a year ago.
* You'll be totally terrified, know that there's very little you can do to impact the outcome and have to move past that. As we sat in my wife's hospital room, a series of specialists filed through, tossing numbers and vital stats around just a short time before she'd be rushed off to the operating room. This was only the first of many times when I felt completely out of control of the situation, had to recognize and accept that and then get my ass into the game. This also came up that day when I began to worry intensely about developmental and physical issues that my son would face from an emergency delivery. There's just a certain point where you have to realize that worrying has its place to help you get a handle on some situations, but after that you need to get back to the task of being a mother, father or parent.
* You'll have to trust doctors more than you'll probably want to. We had nothing but confidence in the team of doctors at the University of Chicago, in the hospital itself and especially in our nurses, but especially in the beginning, there were decisions that needed to be made quickly. You play the odds and make the best decisions you can on the spot. I had underestimated exactly how much "that's my child" can freeze you in your decision-making tracks.
* There is no right or wrong - there is only what works right now. That became our mantra, whether it was navigating different treatments or getting a handle on how the whole process impacted our relationships with friends, family and each other. There's no go to manual for these situations and you have to find the courage to face the reality that what worked last week might not work today. Being able to adjust and move forward is a skill that we had to learn, and it wasn't easy.
* Know when to say "enough." My only minor regret was that I didn't take enough time off the first few weeks. I suppose on a subconscious level, I was trying to restore order to my life by trying to focus on my work schedule and staying within the framework of my company's vacation policy, but in retrospect I could have used a few more days to adjust to my new life. Take the time you need and don't be afraid of not being a team player at work. When my wife needed to take unpaid leave the weeks after my son came home, we decided that you can't buy time and that if we had to make due with a smaller budget, so be it. When you're being pulled in so many directions, you can get tripped up trying to keep everyone happy and in the end, it just burns you out.* Know when to say enough (and just head home for the night). We learned this one fairly early on in our stay at the hospital, where we'd opt to go home and start again in the morning if our son was having a bad day. We were warned time and again by our nurses that it would be a roller coaster (luckily, it wasn't for the most part) but there were just some evenings where his numbers ping ponged up and down and we had to excuse ourselves instead of driving ourselves crazy by watching his monitors.
* You're not a bad parent if you're not living at the hospital 24/7. This is a convergence of the previous two - we had to realize that we weren't doing anyone any favors by being zombies who spent every waking moment in the NICU. Go see a movie or sneak out for a girls' night every now and again and realize that your life doesn't stop just because you have this new and important responsibility. This is easier said than done, but I did notice it became easier to skip a day once I'd broken the initial streak of consecutive days visited.
* Embrace the parents around you. It's easy to become isolated from the other parents surrounding you who are going through similar experiences. I was hesitant at first for two major reasons - I didn't want to bother anyone who was under as much stress as I was and chose to keep a low profile and after a while, I felt a bit guilty that my son was showing obvious signs of improvement, while other kids were not. Not reaching out was a mistake and I was pleasantly surprised that my wife was constantly making an effort to keep up with the other families. They understand more than anyone what you're going through (down to the same complaints about stuffy masks if there's a cold or flu that gets loose in the unit) and this little subculture of parenthood breaks all societal boundaries. Secondly, my fears that the other parents would somehow resent me for having a healthy baby were unfounded and instead, it gave them some hope that their baby would turn a corner soon. When all you have is each other day after day, it's nice to have that network to check up on everyone and bring new families into the mix after you've been there for a while.
* If you're a new parent, all of this is more difficult. In addition to the major shakeup in your life by having a premature baby, you have to deal with all the run of the mill new parent stuff. It took a while for the "you are this baby's advocate" stuff to take hold. For a while, there was a total disconnect between the little person that kind of looked like me and realizing he was my son and that I had a duty to not only be there, but to make decisions for him and protect him. That took some time. On the plus side, if it's your first kid, you have nothing to compare it to, so it's all in your realm of "normal." That helps a lot.
I'm leaving out all sorts of things here, but that's the basic list. Most importantly, you just need to roll with things as they pop up and try to enjoy the experience as much as possible. Despite the unnatural surroundings, we never felt at a loss for love or the wonder of the first grandchild for both families. Our NICU was incredibly welcoming and while we couldn't have our son home right away, at no point did we feel like our stay was robbing us of the experience (once the initial shock wore off).
While we were incredibly fortunate to have a baby that kept clearing hurdles, put on weight and was discharged without incident, we realize that even with today's medicine, that isn't guaranteed. Still, you do the best you can with what you're given and then wake up to do it all over again the next day. You try to create routines and keep on track and with a little hope and a degree of luck, you get to take your baby home.
If you're just adjusting to all of this tonight, I can't say enough about how rewarding the whole experience is. I also want you to know that there are thousands of people like you who have been down this road before and are around to help, even if you don't know us yet.
Welcome to the club.
